Brain-injured Kakabeka Falls man feels 'isolated'

A man disabled by a brain injury feels stranded in Kakabeka Falls, Ont.

Ernie Berndt, 51, uses a wheelchair and has lost his ability to drive, but still wants to live an active life.

There are many services and recreational activities available for him, but most are 30 kilometres away in Thunder Bay and there is no public transit — accessible or otherwise — to get him there. 

"It would be nice if there was a bus to come out here ... once in a while," Berndt told CBC News. "It's so isolated."

A former mechanic, Berndt's quality of life has deteriorated since a tire exploded in his face about 15 years ago, leaving him with a brain injury that eventually robbed him of his ability to walk.

"I'm used to ... doing things everyday," he said. "But now it's just like I'm kind of waiting to die or something."

Locks himself in crib to prevent sleep wandering

Berndt would be willing to move into supportive housing in Thunder Bay, but his efforts to control a bizarre condition that started after his injury are making that difficult.

"I have a sleep disorder," he explained. "I wander about in my [wheel]chair all over the village."

Berndt said he used to go to bed, then wake up outside hours later, unable to remember how he got there. 

"It's kind of like a trance that you're in," he said.

Frightened by those experiences, Berndt decided to restrain himself while sleeping, and designed an elaborate wooden crib with a door that locks from the outside. 

"I get in and then I close this," he demonstrated, pointing to the door. "Once I go to bed ... that won't open until 7 a.m. ... It's timed."  

Berndt sleeps with a cell phone inside the crib in case he has an emergency and needs to get out. Although he feels safer knowing he can't wander in his sleep, his self-imposed nighttime lock-up makes it difficult for him to get a spot in a supportive housing complex, as care homes are not allowed to restrain residents.

He said a representative from a supportive care home came to visit him, but was alarmed by the crib. 

Berndt said care providers have told him his condition could be controlled with medication, but he's already taking antidepressants and refuses to take more drugs.

Transportation important for 'quality of life' 

Although she is not familiar with Berndt's specific case, Alice Bellevance, executive director of Brain Injury Services of Northern Ontario, said isolation is a problem for many people with disabilities living outside of Thunder Bay.

"People who live rurally, like in Murillo or Kakabeka or even Rosslyn ... they ... get excluded," she said. "They don't have access to ... transportation." 

Thunder Bay's specialized transit service for people with disabilities only operates within the city limits. Thunder Bay Transit took over the service from HAGI in January, but transit manager Brad Loroff said there are no plans to expand it to accommodate requests from people living outside the city.

Because his injury happened outside of work, Berndt is not eligible for workers' compensation and lives on the Ontario Disability Support Program [ODSP]. 

"ODSP will pay for some transportation costs, but it has to be related to medical appointments," said Bellevance. "So it certainly excludes those quality of life things, such as ... participating in recreation programs."

Berndt said if he could get to Thunder Bay, he would go there for a swimming program. He said he would also make use of his mechanical skills by modifying wheelchairs with lights and footplates for other people with disabilities — something he's done for himself.  

Bellevance said activities are critical for people with brain injuries to get on with their lives.

"We all need a reason to get up in the morning," she said. "And if you have limitations that now preclude you from going to work or going to school ... sometimes it is just recreational kinds of things ... [It's] kind of hard to do that if you can't get there."